{via} Sometimes I receive letters from the NIH in envelopes marked "extremely urgent" with results from blood tests drawn five months ago. (Do you see the irony in this? Ha.) Sometimes I quit drinking Diet Coke for 2 weeks after a horrendous stomach bug, only to start it up again much more intense than before ....more

Through The Blur

"Through the blur, I wondered if I was alone or if other parents felt the same way I did - that everything involving our children was painful in some way. The emotions, whether they were joy, sorrow, love or pride, were so deep and sharp that in the end they left you raw, exposed and yes, in pain. The human heart was not designed to beat outside the human body and yet, each child represented just that - a parent's heart bared, beating forever outside its chest."...more

Little Bits Of Happy

Today was so utterly glorious I want to remember every last detail. Little bits of happy on a Tuesday in April. This cute gal, ...more

Hello Monday: Let Your Heart Soar As It Will

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Hello Monday: Today Is A Miracle

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Wild & Precious

Yesterday I laughed as the person on the other line of the phone at the specialty pharmacy asked if I understood the storage requirements and dosing (of every waking hour) of the eye drops I've been using for the past 13 years. I painted my girl's toenails Cinderella blue while I gulped down coffee. I deep cleaned the downstairs bathroom and then we high tailed it to one of our favorite parks, as if our lives depended on it ....more

Hello Monday: I Wrote A Happy Song For You

Hello Monday!Hello favorite flower boots I've had my eye on at Target, on sale finally! Woot!Hello to changes. You "Everything Is Awesome!" becoming Sookie's new song of choice to sing at the top of her lungs ....more

Blur Of Colors

It can be funny and somewhat frightening when you realize how immensely powerful your thoughts are; how they climb up toward majestic rainbows and puppies and cupcakes when you focus on the good, how quickly they spiral down when the negative overtakes everything you think about. It is a phenomenon I've always been in awe of, but lately really sinking in and soaking up the notion and how I can use it to better my own life. The shocking beauty of the right now? ...more

A Roaring Ballerina

She was cracking me up yesterday in her ballet ensemble ...and her black boots with the bows on the back. Roaring as she twirled, such an accurate yin and yang of her and everything she does. She teaches me so much, every day ....more

5 Ways To Help Your Child Cope With A Medical Situation

If you have been reading here for a long time now, first of all...thank you! Second of all, you might have noticed that lately I'm stretching what I write about around these parts. My dreams for this blog have always been sharing a little of our lives, including my journey of living with Cystinosis, but there are so many other facets of my life ....more